Medication Non-Compliance

One night in 2007, I started a new antipsychotic. It was to be taken at dinner time. I did as told and took it at the universal dinnertime of 6 pm.

By 7 pm, I had mostly lost touch with reality. I was suddenly so tired that my eyes wouldn’t open but I was far too anxious, scared and twitchy to go to sleep. I felt incredibly ill. I was frantic, terrified and panicked. I was thrashing in a sharp, steel cage between sleep and wake with no way out. I cannot express to you the horror of that night.

Immediate Medication Non-Compliance

Medication non-compliance is when a person is prescribed a medication and then decides to alter the taking of that regimen unilaterally. By immediate, I mean that right after the initial prescription, the person stops taking the medication. So, if a person stops taking a medication on day 4 due to side effects but doesn’t see their doctor for 2 months, that is non-compliance, although not the most bothersome kind.

Long-Term Bipolar Medication Non-Compliance

The more problematic bipolar medication non-compliance scenario is when a person has been on a medication for a longer period of time and suddenly stops taking it. Again, this is often due to side effects. People get tired of gaining weight, or hand tremors, or unstoppable hunger, or sleeping 12 hours a day or constant nausea and they stop taking the drug. This is often an immediate discontinuation of the drug without a taper as they are doing it without talking to their doctor, and of course, discontinuation disrupts their routine.

Yay! I’m Better! Non-Compliance

Perhaps the sneakiest form of non-compliance comes when the bipolar medication works and the person is feeling better. The stars have aligned, the doctor was brilliant, the patient was lucky and suddenly they start feeling like themselves again. For the first time in a long time they are happy, stable, sane. And of course, as everyone knows, sane people don’t need medication. So they stop taking their medication. Why would they take it if they feel good? The fact that it was the medication that caused this feeling is overlooked.

Effects of Medication Non-Compliance

The problem is, suddenly stopping a drug without medical supervision is the wrong approach. People do it, often, because they know the doctor wouldn’t like them going off of medication. Their doctor might pressure them to stay on the medication. And they don’t want that. They want off. I understand this reasoning, but it isn’t a good enough reason not to talk to a doctor.

When people stop their drug suddenly, they go through withdrawal. Withdrawal can be very nasty, or very mild, depending on the drug and the person. In most cases the person is not going to enjoy it in the least, and it very likely could induce depression or mania.

Once the withdrawal is over the person is left without medication. The person is left without the one thing that was treating their mental illness. The person is left without their safety net. While sometimes at first, it feels really good to be without all the side effects, inevitably you are left with what you started with – an untreated mental illness.

I Want Off My Drug

OK, so I completely get why people want off their drugs. I’ve had horrible things happen to me, others have had horrible things happen to them, getting off a drug is a perfectly reasonable response in many cases. So:

That’s it. Just talk to your doctor. I know it’s sometimes harder than it sounds, but that’s what you need to do. Drug non-compliance is often a sign of a worsening mental illness. If that’s not you then you need to have the rationality to do the above.

Don’t make a mistake today that could land you in the hospital tomorrow.

14 Responses to Medication Non-Compliance

Seems like people aren’t being encouraged to report serious side effects like the ones you described. There’s a new iPhone App, ‘MedWatcher,’ to support Real-Time Drug Safety Surveillance with info from FDA, reviews and which allows both patients and clinicians to report adverse events: http://www.healthmap.org/medwatcher.

The problem with your suggestion of talking to a doctor is the doctors don’t always listen to the patient. There is an unfortunate view that the brain is mechanical in nature and everything is predictable. Because of the perceived incapability of the patient there is often less than total willingness to cooperate and where the patient and doctor disagree, generally speaking, the doctors tends to win.

I was on medications that I believed to be causing me serious harm. My muscles were wasting away. My vision became bad, my heart rate irregular, and I was even loosing the ability to perform bowel movements normally. This, in addition to a variety of side affects that were causing problems of mental instability made all the worse by constant pain. If I took doctor’s advice I wouldn’t have recovered.

I first went to the doctor. He refused. I waited until I was 18 and took myself off them. That was over 10 years ago. My vision has improved about 10% as the muscles around the eye grow back, though my vision hasn’t completely recovered. I stopped having heart murmurs. I stopped having asthma attacks. I am able to have normal bowel movements. My muscles overall have toned. And I am a productive member of my community and I own my own 1880′s 3 bedroom Victorian home. I am also getting ready to go back to college for my associates degree in biotechnology. I wouldn’t have even had the mental focus for college if I was still on those drugs.

I agree you should go to your doctor first if you want to get off medications, but if the doctor doesn’t cooperate, that doctor probably doesn’t have your best interests in mind.

I agree with Richard. My doctor never listened to a single side effect in 8 years and lied to me constantly. My life and body are a shambles. My new doctor is extremely aggressive and even offensive. I don’t need my former iq of 130 ( now about 40 on lithium) to know the guy ain’t gonna give me permission for nada. Why should I show respect for them when they have disrespected me so much. It’s not a level playing field. I was honest and compliant for 8 years and I was basically a fun experiment for a dopey dr. I wish I had listened to my instinct instead of the dr and my family. Listen to your gut if you want to survive psychiatry. It’s not even about the bipolar for me anymore. It’s a constant battle to minimize meds and try to survive. Their complete lack of concern for the physical and emotional consequences of their vast overmedication of all patients never fails to shock me.

I agree with Richard too, if the doctor isn’t willing to work with you on addressing your concerns, then it’s time to get a new doctor.

I’m sorry you’ve had such a rough time with doctors, all I can say is that if a doctor isn’t working for you, I would suggest getting a referral to another. Go to your GP and ask for a recommendation. Go and research doctors online.

It is not fair to suggest all doctors don’t care about the wellbeing of their patients. Many do. Mine do. Many others do. There are certainly bad doctors out there, I have ranted against them plenty. But they aren’t the only people that exist.

I took meds for 20 years. I lost my memory, I lost my ability for critical thinking, I lost my ability to read or do my crocheting, I lost my sex drive, I lost my hair, I lost my ability to relate emotionally to the ones I love. However, there were gains: I gained 35 pounds, I gained the ability to sleep and sleep and sleep my life away, and I gained a pre-cancerous tumor on my liver and severe arthritis directly caused by the meds. It took 3 years to gently, patiently wean myself off all meds. Since I took my last pill April of 2011, I have lost 14 pounds without even trying, enjoyed a love life with my husband for the first time in 5 years, resumed my crocheting and started my own business, patched up some family relationships, and have branched out socially. I am so sick of hearing about medication compliance. There are other ways to maintain one’s mental health. I faithfully go to therapy, see my pdoc, and work http://www.recovery-inc.org. Nuff said.

I’ve been on antidepressants for about 15 years. In the early years, I was non compliant because of lack of understanding; these days, I occasionally (but rarely) go through phases of stopping my meds – generally because I feel I deserve punishment and by stopping my meds I know I am harming myself. I’ve lied to my psych and my Dr about what meds I am taking as a way to punish myself for how I feel/the person that I am. I know that what I am doing isn’t helping my situation, but I acknowledge that it demonstrates, even to myself, my screwed thinking and ways of dealing with things.

You make an excellent point that sometimes stopping meds is a way of punishing ourselves and that’s a behaviour we have to look at and deal with in order to be successful.

And, for the record, your ways of thinking are not screwed, just not helpful and something to be addressed. But knowing that is the first step to addressing them and moving forward. Which is great for you.

These articles gloss over that the brain is still mysterious. Contrary to pharmaceutical advertising, there isn’t evidence that their drugs impact serotonin. For this reason, such advertising assertions are banning in Canada and Great Britain. Most US advertisements have changed to only imply this cause and effect of their drugs.

It seems that medications used have a “shotgun effect” that is much different than patients seem to be led to believe. Probably, this is why these drugs have so many intolerable side effects.

The paradox is that some drugs used for the treatment of this disorder are used to treat Parkinson’s Disease; when taken for a length of time or at high doses, the drug causes the symptoms of the Parkinson’s disease: these are called pseudo-Parkinson’s symptoms.

I’d like to hear from the patients with Parkinson’s-like symptoms: is the treatment worse than the disease (bipolar disorder)?

Having read elsewhere that the side effects of a bipolar medication regimen include rapid weight gain of between 40 and 60 pounds, how is your exercise and diet plan working out these days?

Are you finding it hard to walk for 30 minutes daily doing the Haldol-shuffle? Does sleeping 12 to 14 hours daily interfere with your exercise plan? Is your increasing appetite due to your “greens and beans” bipolar diet? By the way, how does that diet effect your quality of life? Do you still require assistance to tie your shoes?

I personally gained 50 pounds on seroquel causing me to stop it without a doctors supervision. I taped myself down from 300 to 150 to 100 to 50 mg. So I was smart about it. I just gained so much weight I was done. My pdoc found out through my parents and ended up doubling my dose of latuda which I can barely hold down so I’ve speed taking that. Another side effect that’s not worth it. I barely eat and lost 16 lbs in a week Thanks to my new bulemic diet and is starting to cause anorexia as well from me not wanting to touch good at all. Not worth gaining an eating disorder personally. So I know what you mean.

One of the things I hate to hear from friends and family is that the “Yay! I’m better reason” seems to be the only one they are aware of, and are therefore cruel and judgmental about anyone wishing NOT to be medicated. Those that know that I’m bipolar often regale me with lovely tales of someone they know who went off their medication… and catastrophe ensued. When this person resumed medication all was bright and happy again.
The problem is they are NOT me. They are not even the ones suffering from the same disease!
I am sorely tired of the dry mouth & eyes, the aching, the blurred vision, the tremors, the fatigue, the muddled thoughts, the dimmed feelings – justing being “blah”. I desperately wish for a vacation from these effects and am now weighing them against my suicidal episodes. Right now being suicidal is looking better than all these stupid side-effects.
Yes. That’s how much I hate these side-effects. I wonder, too, if it’s an indication that I am not as stable on these drugs as I should be.

The reason I have stopped taking my medications in the past was the psychiatrist seemed to feel that if one drug didn’t work, let’s just switch to another! I was put on Depakote for my bipolar 1 and got a rash all over my body and was then placed on Lomictal. Although it did calm my symptoms it also numbs my feelings. The doctor added Seroquel which caused me to gain 40 pounds in two months. Psychotropic drugs do help in a crisis but I think there are better paths for long term management of my illness.

I agree with Sue that medication is helpful in a crisis situation but I am beginning to realize that this may not be the case over the long haul. When I retire in 3 years I’m going to try to ween myself off them. I’m on such low doses anyway. I would try it now but I don’t want to risk ending up in hospital again and maybe lose my job this time. Once I have a retirement income and my life is less stressful Ill feel safer to experiment a bit. I often feel like the side effects definately out weigh the benefits, but I don’t complain too much to my doctor because I don’t want to have to increase my medication or chance switching to a worse one. To those that know me, they believe the medication is the answer to all my/their problems but they’d be wrong. On the outside everything looks fine but on the inside I’m not exactly tiptoeing through the tulips with joy on these medications. Lets face it, doctors are in bed with the pharmaceutical companies, they keep each other in business. In the meantime I am going to try to try to live a healthy lifestyle and read my self help books for new ideas. Unfortunately working with a counselor is not a option for me at this time so I also go through self help workbooks that are useful